Saturday, May 18, 2013

Tragedy demands answers- start asking the RIGHT questions

Two more tragedies for the autism community occurred over the last week as well. This is almost too much for my heart to bear. I have included links to Drew and Owen at the end of this blog. Please send healing thoughts to their families as well.

Unspeakable tragedies occur more often than anyone wants to think about.  When terrible things happen, whether on a national or global scale, such as 9/11, Newtown, Boston Marathon Bombing, or on a smaller scale, such as the case of Mikaela Lynch, an autistic child who wandered off and drowned, people want, no, they DEMAND an answer. WHY did this happen? HOW could this have happened? And most of all, WHO  is to blame?

Mikaela Lynch disappeared  from her family’s vacation home in Clearlake, California on Mother's Day of this year. Mikaela had non-verbal autism, and  like so many  children with autism, she was attracted to water.   From the minute I saw the first story released, (you can read it here,) my heart went out to the family. I know what it's like to have a wanderer,  The Boy wandered off  twice when he was young- once even being brought home by the local police, prompting us to put alarms on the windows and special locks on the doors. The Boy was somewhat verbal at this time, he could tell people what his name was, and, at 4 years old had a developmental delay of about 2 years.   It was when this happened that I went out and researched autism and elopement, because it was all new to us. I was shocked to find out that nearly half of all children with autism wander. I was equally shocked  to find out that he number one cause of death of individuals with autism involve wandering incidents leading to drowning.  Both occur frequently and a quick glance at the latest autism news headlines will reinforce these unfortunate statistics. What is also very sad and scary- only about 50% of parents and caregivers are aware that elopement is a common issue with autism. If you don't know, how can you be preventative? Educating PARENTS about the very real issue of wandering and autism is imperative.  

Headlines focused on the fact that she "wandered away, naked", I don't think I saw one major headline that didn't focus on this part of the story.  MISSING AND NAKED screamed at people seeing the story. Most people's first question was "Why was she naked?" This headline also lead to immediate assumptions that there was something wrong with the parents.  It's human nature.  When something terrible happens, especially to a child, we as parents may question our own parenting, or mentally pat ourselves on the back for doing a "better job". One article in The Examiner said "The parents have been under scrutiny for their failure to supervise the child, leading directly to her disappearance, which has caused animosity between some people. The fact of the matter is that no matter what the circumstances, parents should never leave their young children unattended when they are at risk of being harmed."  This made me beyond angry, and even more so, when the article went on to say "This should be a warning to all parents". Typical of an publication like The Examiner, but infuriating nonetheless.

But blaming, shaming, and shoulda-woulda-coulda does nothing to help. We NEED to continue, and do more about EDUCATING the masses about autistic behaviors.    One very common occurrence (ask just about any family raising a child on the spectrum) is stripping off all clothing. Sensory and tactile issues are a very large, and common issue among those with autism. Tags, scratchy fabric, things that are something neurotypical people just deal with, can literally be painful for someone on the spectrum.  So the fact that 9 year old Mikaela had taken off her clothes is not something that was shocking to me. What bothered me was people's reactions on my Facebook page- "Why was she naked? Where were her parents? If they knew she might wander, how come they weren't paying attention?" These comments made my blood boil!!  These are NOT the questions to be asking! This is not the time to start blaming parents! But that is exactly what was happening. Fingers were pointed at Mikaela's mom, who was in the back of their home,  putting screens on vent holes because the wasps were building hives in them, to keep her family from being stung. s A  bee scared Mikaela’s brother and  he ran. That is when Mikaela disappeared.  Her mom's response time was immediate- literally 2 minutes- and police were called within 13 minutes. These are NOT the actions of a neglectful parent.  

Our kids can disappear in the blink of an eye- in the time it takes to go to the bathroom, check something in the oven, or answer a phone call, it is possible for a child on the spectrum to disappear. It literally is that fast.  I keep a VERY close eye on The Boy. My hands are on him at all times in public- even now that he is almost 11. We don't have to use alarms or special locks anymore, but I am still hyper vigilant.  He is high functioning, but still has a diminished capacity for self preservation and danger. And all it takes is one second.  I learned the scary way about autism and wandering, but was very lucky The Boy wasn't hurt. I educated the neighbors with pools about his attraction to water. And, living on an island as we do, and not far from water, he was never outside without me or The Mister.  Even after repeated concerns to his first preschool about his propensity to wander away, and assurances from the teachers that they would be watchful- he still LEFT preschool, without anyone knowing. That was a phone call I will never, ever forget, that and the feeling of abject terror that came along with it. Again- the situation had a happy ending, but so many don't.

The National Autism Association has a campaign called  Big Red Safety Box which includes the following 

1) A Get REDy booklet containing the following educational materials and tools:
A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter

2) Two (2) Door/Window Alarms with batteries

3) One (1) RoadID Personalized, Engraved Shoe ID Tag*

4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows

5) Two (2) Safety Alert Window Clings for car or home windows

6) One (1) Red Safety Alert Wristband

This is a wonderful resource, and through the help of donations, many families can be provided this invaluable resource.   There are also GPS tracking bracelets that can be purchased, but are VERY expensive (starting at around $299) and for already cash strapped families this may not be possible. Swim lessons are also a must- unfortunately, your average YMCA swim instructor may not know how to teach an autistic child to swim.  There was a program near us that actually did a "clothes on" lesson so children could feel how different it is- heavy and constricting-nothing like when wearing a bathing suit.

Perhaps the  most important ethical question we can ask ourselves when such event happens is whether there was anything that could have done to prevent it, and what can be done in the future to prevent it. and on some levels, we do ask ourselves these questions  Unfortunately, the immediate thought is there must be someone to fault, something to blame.  This is human nature, a visceral reaction to something we cannot understand.  While there ARE many cases that there is a specific target to lay blame on- this is definitely not one of them. This is a tragedy, this is a family who has lost their child, and a mom who will most likely blame herself forever . Asking why Mikaela's mom took her eyes off her is not the right question.  Making statements like "If that were my child I would have done _______ or ________"  are not helpful either.  Let's remember, this is a mom. A mom who has lost a child. A mom who needs support, not accusations.  It is times like these that the autism community needs to rally around one of its own- and work even harder than ever to EDUCATE everyone.  


Monday, May 13, 2013

My baby went to camp today and I am a WRECK!

Ready to go!

Fifth grade camp. An amazing opportunity the kids in our district get to experience and look forward to from 1st grade on. When I sent Teenzilla, I was a little nervous, but she had already spent a week at Girl Scout camp, so she was ready to go, and I was pretty relaxed about sending her.

But The Boy is different. Not only does he have autism, he is MY BABY.  And in almost 11 years I have not been away from home for more than a weekend- and not even a full 48 hours so this is just as much about me as it is about him.  Today, The Boy is embarking on a journey that a lot of kiddos on the spectrum may not get a chance to do. Runners, non verbal, numerous medical issues may prevent a lot of kiddos with autism from being able to enjoy and be safe at a fully inclusive school week long camping trip.  I feel very blessed that The Boy is able to participate.

While I know in my heart he will thrive there I cannot help but have those crazy motherly instincts that drive all moms bonkers when they are away from their babies.

Am I excited for him to experience camp? Absolutely. Do I trust that  the teachers,staff and high school counselors will care for him, watch over him, and not let him near danger, and recognize when sensory overload is imminent ? Undoubtedly. Am I worried about  his very limited eating, sleeping in a bunk bed and group showering? Damn straight I am! Do I think he will come home singing fabulous songs, full of stories about his week away and be tired and smelly? I expect it.  

But I am a mom, and I worry. I worry that he may not like certain activities. I worry that he will get homesick, I worry that he will feel alone.  These are all irrational fears, I know. I have sent a kid away to camp- and she was well taken care of. The Boy will be well taken care of, too. He is bunking with some buddies from football, who found him right away this morning to get on the bus. He was smiling,and excited. There weren't any tearful second thoughts, hanging on to me or dad and refusing to let go, not one, single, concern.  That may change tonight- his first night away from home, a strange place, a different routine, but the teachers and counselors are all aware and assured me they will make the transitions as easy as possible. And even though they discourage calls home- if he really really needs to hear my voice- they will let him call home.  That eases my worry, if only a little bit.

This experience will put him in an environment where he was required to be more independent, work with his neurotypical peers in a setting completely different from school, or the football field.  It will hopefully help him to gain confidence in his own abilities, the fact that he can live without screens and be a bonding experience with other kids that will be a big help when they go to middle school next year. 

I am a nervous wreck. My mind is alternating between the worst and best case scenarios, trying hard to concentrate on the best. His smiling, excited face and declaration of "I am so excited to go to camp!" are definitely keeping my emotions in check- I didn't even cry too much when they left!  And I am reciting "No news is good news" over and over in my head- because that is a solid truth I can be confident in. 

This week away is a huge learning experience, for us both. It is sure to fly by, before I know it, it will be Friday and The Boy will be home. I can't wait!
Happy and excited!